Chronic pain after multiple (failed) fistula abscess cavity attempted closure

[jackie1983]

Hi All,

Just looking for some support really, and to hear of other's similar experiences. I am from the UK, 32 years old. I have come back as not having Crohns after multiple investigations.

I have had 6 operations in the last 14 months for a high rectal fistula. My abscess cavity opens next to (but thankfully is not connected) to my fistula. The cavity is large and so repeatedly needs to be opened and all the yucky granuloma tissue removed in the hope it will heal. Finally the surgeon thinks we have made good progress. I have had a seton for over a year now, and the gauze, ooze, and cleaning of the seton are not something would like to continue with.

What really bothers me is that despite all the surgery I still cant wear jeans, cycle, sail, sit on hard upright chairs, walk down the street without the gauze moving and having to manoeuver it without passes by looking at me.

I was wondering if anyone else has this chronic pain where the abscess cavity goes and the granuloma tissue is. Does it ever go? My surgeon today said it may not which I find a little disheartening.

LIFT procedure planned for Jan which I am pleased for (minus the failure rate!)

Thanks Jackie

 

[DJW]

Hi Jackie and welcome.

I know how awful these things are.
Sorry I don't have any answers for.
Sending you my support.

 

[ronroush7]

Welcome. Sending support

 

[CarlyL]

Hi Jackie, I too am in the UK and am 34 years old. I also have not been diagnosed with crohns despite several tests.

I had a perianal abscess form in July 2013 and had to have it incised, drained and then packed for nine weeks, about two months later I started forming a blister in the wound site, was then told it was a transphincteric fistula and I had my first seton placement. The pain was quite chronic up where the initial abscess wound was packed for around a year. Once the seton calmed down around 6-8 months in the pain subsided quite a lot. I do still get the odd pain in the area where the abscess was but it is more a dull ache nowadays and the granulation kept re-forming but eventually the seton seemed to calm it down.

It always hurts in the abscess cavity after each surgery, I am assuming this is because of scar tissue. I have had the following procedures if you have any questions:

Abscess incision and drain- July 2013
Seton placement-(loose green thread) December 2013
Bio-plug fitted- June 2014
2nd seton placement (loose green thread)-December 2014
LIFT procedure- Sept 2015
3rd Seton placement(rubber straw like)- with half the tract laid open- November 2015

As you can see my treatments have not been a success and I don't seem to heal well in the rectal area at all. I too have not worn jeans in 2 and a half years or been able to dance or exercise anything more than a fast walk so I feel your frustrations!!! Also I have taken to balancing one one bum cheek to sit and cannot sit for anything more than 20 mins even with a donut pillow.

Sending you best wishes, Carly

 

[AFS]

Carly, My story was similar to yours in some ways. I found a cure in India. Read my blog for details.

https://fistulapatient2patient.wordpress.com/

 

[Brewtowncronie51]

Hi Jackie, I too am in the UK and am 34 years old. I also have not been diagnosed with crohns despite several tests.

I had a perianal abscess form in July 2013 and had to have it incised, drained and then packed for nine weeks, about two months later I started forming a blister in the wound site, was then told it was a transphincteric fistula and I had my first seton placement. The pain was quite chronic up where the initial abscess wound was packed for around a year. Once the seton calmed down around 6-8 months in the pain subsided quite a lot. I do still get the odd pain in the area where the abscess was but it is more a dull ache nowadays and the granulation kept re-forming but eventually the seton seemed to calm it down.

It always hurts in the abscess cavity after each surgery, I am assuming this is because of scar tissue. I have had the following procedures if you have any questions:

Abscess incision and drain- July 2013
Seton placement-(loose green thread) December 2013

Carly and Jackie
Thank you so much for telling us your story Or support you in sending up prayers for the ball for you
Bio-plug fitted- June 2014
2nd seton placement (loose green thread)-December 2014
LIFT procedure- Sept 2015
3rd Seton placement(rubber straw like)- with half the tract laid open- November 2015

As you can see my treatments have not been a success and I don't seem to heal well in the rectal area at all. I too have not worn jeans in 2 and a half years or been able to dance or exercise anything more than a fast walk so I feel your frustrations!!! Also I have taken to balancing one one bum cheek to sit and cannot sit for anything more than 20 mins even with a donut pillow.

Sending you best wishes, Carly

Carly And Jackie
Thank you for sharing your story. I will pray for the both of you.